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Title V Technical Assistance Meeting

 March/April 2015 - CYSHCN and Transition

Download a PDF of this issue.


By Sam B. Cooper III, LMSW-IPR

Don't worry; I know where we are going!

OK, I admit it. Asking for directions? ...Just not a natural tendency in this former Boy Scout. We have so many more tools now to help us be "self-sufficient" -- like that lady in my smartphone, or those fancy new Dick Tracy wristwatches from the famous fruit company. The thing is, even decked out with all the technology, the latest map and guidebook, finding one's way in new territory is never easy. In this edition of Pulse, we have gathered great stories about children and youth with special health care needs (CYSHCN) programs and transition. [more]


By Lori Tremmel Freeman, BS, MBA
Chief Executive Officer, AMCHP

As you read this issue of Pulse focused on children and youth with special health care needs and transition, I'm going to ask you to take a few moments to imagine and to place yourself in a challenging situation.

Imagine you're sick or injured in some way. You are a fully grown adult with special health care needs. When you logically seek care from your adult health care provider, who you want to trust, you are given the wrong advice or care. You sense this has occurred and may even continue to suffer further injury, but you aren't sure what to do. [more]


Measuring Transition Performance: Options for States to Consider

By Peggy McManus, MHS, Dan Beck, MA, and Patience White, MD, MA
Got Transition

Health care transition is one of 15 national priority areas selected by the Maternal and Child Health Bureau (MCHB) as part of MCH Transformation 3.0. The performance measure calls for youth with and without special health care needs to receive services necessary to make the transition from pediatric to adult health care. Got Transition, the MCHB national resource center on transition, has been working with MCHB, AMCHP, and five state Title V agencies (Maryland, Ohio, Oregon, Texas and Wisconsin) to develop a set of options for states planning to select and implement transition as one of their national performance measures. [more]


Texas Children's Hospital Innovates and Collaborates in Transition

By Albert Hergenroeder, MD
Professor of Pediatrics and Chief, Adolescent and Sports Medicine, Texas Children's Hospital

Constance Weimann, PhD
Associate Professor, Pediatrics-Adolescent Medicine and Sports Medicine, Baylor College of Medicine

Currently, 90 percent of CYSHCN of primarily a physical nature in the United States will enter adulthood. Although CYSHCN are living longer, methods to improve survival have not been matched by methods to maintain their quality of life and/or medical care as they transition from pediatric to adult based health care. As a result, increased morbidity and mortality have been reported in this post transition period if the health care transition (HCT) is poorly managed. The need for improved HCT at the local, state and federal levels has been recognized for a generation, and call for action has gained momentum over the past decade.[more]


Advances in Autism Research & Care: The Autism Intervention Research Network on Physical Health

By Audrey Wolfe, MPH 
Clinical Research Coordinator, Autism Intervention Research Network on Physical Health

The Autism Intervention Research Network on Physical Health (AIR-P) conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities. The network also works to disseminate main findings to parent and professional communities. Network activities include developing evidence-based guidelines and tools; disseminating critical information on network research findings, guidelines developed, and tools to health professionals and the public; and developing and mentoring new investigators in the field of ASD and other developmental disabilities. [more]


Improving Transitional Care for Children and Youth with Epilepsy

By Trisha Calabrese, MPH
Director, Division of Innovation, American Academy of Pediatrics

Although children and youth represent one of the fastest growing populations affected by epilepsy, many do not have access to pediatric neurologists and high-quality coordinated care provided in a medical home. In the fall 2013, the American Academy of Pediatrics (AAP) was proudly selected as the Coordinating Center for Children and Youth with Epilepsy under a Health Resources and Services Administration (HRSA) Maternal Child Health Bureau (MCHB) Cooperative Agreement. The overarching vision of the Center is to establish a multifaceted community-based system of care that ensures that children and youth with epilepsy (CYE) have access to the services required to achieve optimal health outcomes and an improved quality of life. [more]


AIM Access: A New Training Opportunity for Title V and Other State Officials

By Carolyn McCoy, MPH
Senior Policy Manager,Health Reform Implementation, AMCHP

The Alliance for Innovation on Maternal and Child Health: Expanding Access to Care for Maternal and Child Health Populations (AIM Access) project, funded through HRSA/MCHB, is an exciting grant opportunity for AMCHP and its members. The three-year (2015-2017) project is a collaborative effort of six national organizations committed to achieving significant impact in three focus areas: strengthening continuity of care and coverage and care for pregnant women and children, improving systems of care for CYSHCN, and promoting implementation of Bright Futures. [more]


Evaluation of the CHIPRA Quality Demonstration Grant Program: Selected Findings about CYSHCN

By Ellen Albritton (Academy Health) and the national evaluation team from AcademyHealth, Mathematica Policy Research, The Urban Institute, and The Agency for Healthcare Research and Quality 

The Children's Health Insurance Program Reauthorization Act (CHIPRA) Quality Demonstration Program funded grants that supported efforts in 18 states to identify effective, replicable strategies for enhancing quality of care for children. Together, the grant program and its evaluation are among the nation's largest and most important efforts to improve the quality of health care for children enrolled in Medicaid and CHIP. Several states in the demonstration have been implementing projects to improve care for CYSHCN, including supporting practices in enhancing care coordination and improving caregiver peer support programs. [more]



CHIP, CYSHCN, Transitions and Transformations

By Brent Ewig, MHS 
Director, Public Policy & Government Affairs, AMCHP

As this Pulse issue on CYSHCN and transitions goes to press, the future of the Children's Health Insurance Program remains unresolved. While a two-year extension of CHIP -- as well as Maternal, Infant and Early Childhood Home Visiting (MIECHV) program; the Personal Responsibility Education Program (PREP) and Family to Family Health Information Centers (F2Fs) -- passed the House of Representative by a solid bipartisan vote of 392-37 on Mar. 26, the Senate put off its vote until the week of Apr. 13. Additional details are available in the most recent AMCHP Legislative Alert. [more]


By Asha Purhoit 
Ryan Colburn Scholarship Awardee

When you're born with an obvious congenital defect, like a cleft lip and palate, the care coordination is likely to start from day one. Growing up, my mom told me the story of the self-assured plastic surgeon we met before I'd even seen my pediatrician. He swooped into the room all smiles and confidence and reassured her, "we'll do this…and a little bit of this," (while motioning his hands) "and it will be all done!" Granted, the long-term care required for a craniofacial defect is a bit more involved. [more]



State Title CYSHCN Program Highlights: Youth Transition to Adulthood

By Donna Harris
Director, Office for Genetics & CYSHCN; Maryland Department of Health and Mental Hygiene

The Maryland Office of Genetics and People with Special Health Care Needs is planning on conducting a brief inventory of its programs and state disability organizations to identify the types of transition assistance offered and the populations served -- youth and young adults with and/or without special needs, families, pediatric and adult clinicians. [more]

By Manda Hall, MD
Director, CYSHCN, Texas Department of State Health Services; Purchased Health Services Unit

The Children with Special Health Care Needs (CSHCN) Services Program in Texas has identified multiple opportunities to integrate the Six Core Elements of Healthcare Transition into initiatives of the Texas Title V Transition and Medical Home Workgroups. This includes piloting the Six Core Elements with workgroup members and integration of these elements into strategic plans. [more]

By Sharon Fleischfresser, MD, MPH, FAAP
Medical Director, Wisconsin Children and Youth with Special Health Care Needs Program, Wisconsin Department of Health Services, Division of Public Health

Wisconsin Children with Special Needs, with the Waisman Center at the University of Wisconsin, is supporting transition quality improvement pilot projects involving pediatric and adult practices/health systems using the Six Core Elements of Health Care Transition. Two types of grants are available -- planning grants ($2,000) and implementation grants ($20,000). [more]



National MCH Workforce Development Center Coffee Talk Series -- Check Out the Coffee Talk 2 Video! 
This series will be hosted by the National MCH Workforce Development Center Change Management core on three pertinent topics benefiting the Title V workforce. The series will consist of three archived 20-minute videos for AMCHP members to access bi-monthly at their leisure. For the alternating months, AMCHP will host a Twitter chat on the content shared during the preceding month's archived video. [more]

Beyond Practice: Fostering Diverse Partnerships for Successful Care Coordination
The National Center for Medical Home Implementation (NCMHI) is hosting the second webinar in a three-part series focusing on implementation and evaluation of pediatric care coordination on Apr. 22 from 11 a.m. to noon CST. This webinar will showcase innovative models of cross-system care coordination through family engagement and partnership across clinical, public health, social service, and policy organizations. [more]

PHIT 2015 Scholarships Now Available
The annual Public Health Improvement Training (PHIT) on Jun. 9-10, 2015 in New Orleans, Louisiana, will provide hands-on training workshops and networking opportunities for public health practitioners to be able to initiate and apply performance improvement skills. PHIT partial scholarship applications are now being accepted through Apr. 30 based on financial need. Seven partial scholarships are currently available to potential PHIT participants. [more]

Does Your Hospital Need Help Improving Its Breastfeeding Rates?
The National Institute for Children's Health Quality Improving Performance on Breastfeeding Measures group coaching program provides hospitals direction on how to hardwire change to improve perinatal care. Topics include breastfeeding & supplementation policies, measurement and using data to drive change. Although the Joint Commission revised its requirements, don't lose momentum on how to improve & document breastfeeding measures. [more]


Learn more about how the redesigned National Survey of Children's Health (NSCH) will track the four NPMs with special relevance to CYSHCN here.

View CYSHCN and transition resources here.

Meet the AMCHP Board of Directors.

Meet the AMCHP staff.

Click here to see the AMCHP MCH Events Calendar.